Friday, 23 September 2022

Blog 53: Roller coaster

“Well, you have to go in, the boy must be there, I can’t see how he can have been moved to anywhere else” I say to Ntate Machesa and Mme Maseretse. The boy has cerebral palsy, severe spasticity and is as rigid as a stick, impossible to bend in the middle by even the slightest degree. He is eleven years old and lives with his grandmother, after both his parents died. On my first visit he was lying on a urine-soaked mattress in the cold back room, pelvis rotated, both hips and his knee dislocated, dirty and malnourished. 

I’ve returned today with Mme Maja and the other two helpers to see if things have improved. The morning started badly with news of the death of a child we only visited a few weeks back, cause of death unknown. There is nothing we can do but put the sadness aside and continue with the day. On the first two follow up visits of the morning both mums have taken on board the advice given on our previous visit and with their daughters both doing better. I’m hoping that we are on a roll and this third visit will be just as successful but since we have been knocking on the door for the last ten minutes and peering through the windows without any response, this hope is fading. 

 

Ntate pushes the door a little more forcefully and it slides opens with some effort. For one moment I think that maybe grandma has collapsed behind the door, but it turns out it’s just a breeze block and Ntate is finally able to enter the house with Mme. Thirty seconds later they come out and announce that there is no one inside but the back door has a shovel against it, so how is it possible someone could have left both doors wedged closed, unless they climbed out of a window?  Since all the windows are locked the mystery deepens and I circle the house again, looking for clues. Suddenly a young man pops his head out the back window. 

 

“Who are you?” I look at him suspiciously, he looks stoned, and I call the others for a translation. It turns out he is grandma’s son; she has gone to a funeral, and he was in a room at the back which the others didn’t look in when they entered the house. The boy is in this room as well, at least this time the room is warmer, and he is lying on a mattress with a plastic cover. The son is working in South Africa and can’t give and detailed history on the boy, the last entry in the boys Bukana (medical book) is 2016. We need to work with grandma to try and educate how she can improve her grandson’s life, but grandma doesn’t have a phone and we can’t get hold of her. Mme Maja must try and call a neighbour to communicate with grandma through a third party. 

 

Sometimes the series of obstacles that must be overcome even access a child, let alone help them, can be very challenging. I cast my mind back to Monday, when I walk through the door to find a girl with her hands bound together. I soon understand why as she bears the scars on her head from continually hitting herself, together with bite marks on the back of her hands. She is taking medication for bipolar and schizophrenia, but apart from helping her to sleep at night this medication is giving no respite from the self-harm during the day. I don’t know how to assist her but then I remember a soft helmet to protect the head that I brought in some years back stored up in Maseru. 

 

For now, it’s the most practical thing I can come up with and on Thursday I retrieve the helmet from Maseru. I discover its far too small but hopefully with some Velcro and craftwork I can make it fit. The day is frenetic with visits to both school Principals and trying to adjust a bunch of wheelchairs. Suddenly in the chaos of the school yard, surrounded by primary school kids all fascinated by me using a spanner, I realise if I don’t hurry, I’m going to miss the 4pm deadline for signing the book of condolences at the British High Commission (BHC). Ntseliseng and Ntsukunyane turn up in the nick of time to help me and I quickly exit the school to beat my way down through the rush hour traffic. I arrive at the BHC with ten minutes to spare and persuade the security guard to let me enter. 

 

The BHC have been very helpful both to me and the project and having received an email from them that a book of condolences was open should I wish to sign, I decide it might be prudent move to continue to build positive relationships with them. I missed the outgoing BHC’s leaving event and maybe this visit will present an opportunity to meet the new BHC. Adrenalin fuelled I zip through the inner security gates and screech to a halt in the hallway where a picture of the Queen and Duke of Edinburgh look down on the open book of condolences. 

 

The new BHC, Harry, is standing right by looking suitably solemn. I didn’t expect him to be there, and a slightly stilted conversation follows as I find out he is from the Congo with two small children and likes hiking. He finds out that I also like hiking, know lots of great places in Lesotho to hike and that I’m a physiotherapist and make cardboard furniture for children with disabilities. He looks slightly alarmed by this introduction and I decide to move swiftly on to signing the book of condolences. 

 

I open my notebook to the two short paragraphs which have taken hours to craft to try and avoid any offence to anyone connected with the project. Royalty and its associations can be a very sensitive subject. As I start to copy the piece, I realise it’s going to be hard to fit it in the allocated box. I make my writing smaller, but realise that not going to work, so I start to cut out parts. Harry notices I’m struggling and suggests I move onto the next box. I resist, but he insists, and I end up putting the cut sentences back in at the end of the piece in the overspill box. 

 

I’m not sure it makes any sense at all but hopefully my writing will be too small for anyone to read. After this rather embarrassing struggle with the book of condolence I say I must leave and dash out the door to try and get back to Hlotse before dark. I just make it and am glad to wake in the morning to glad to find its Friday. We are taking out some equipment to children which hopefully will bring about a positive change to their lives. 

 

The first visit is to a boy whose wheelchair was far too small and I am replacing it using money raised by the folks back home. The deal was that he would get a new wheelchair if grandpa built a ramp to improve access to the house replacing the two broken steps, which were dangerous both for the boy and his grandma to use. Grandpa kept his side of the bargain, and the boy is now able to sit comfortably in his new wheelchair and exit the house in style pushed by his grandma. On a flat piece of concrete at the back of the house the boy soon learns to self-propel in a circle and even forward and backwards, no mean feat as he can only use one hand. His face breaks into a huge smile. It’s a great result for his independence and a great result all around for the family. 

 

On our second visit we are taking out an APT chair for a boy who was involved in a road traffic accident when he was five and suffered a serious head and brain injury. He has been unable to talk, move or sit up since. For the last ten years he has spent most of the time lying on a mattress in the back room. We put the chair in the kitchen and with some padding the boy can sit up in it and Mme Maja gives him some water to drink. Finally, the boy can be part of the family again and be fed his meals at a table with some dignity. Its massive change for the better for his quality of life and I think his parents feel quite emotional to see him sitting there. 

 

We move on to the neighbour’s house, where an eighteen-year-old boy with cerebral palsy lives. His mum has just seen the APT chair we’ve given out and thinks her son would benefit from one too. I was concerned by the lack of space in the small shack and thinking a folding wheelchair might work better, but she feels the chair would work best for him. I go with it and measure him up. The boys quite funny and we enjoy a bit of banter in the process and some laughter. As usual this week’s been a roller coaster and at times exhausting with its ups and downs. It’s good to end Friday on a positive note but I know the peaks and troughs will just keep coming, it’s all part of the journey. Its best to hang on tightly and enjoy the ride when you can. 

Sunday, 21 August 2022

Blog 52: All change

We have been driving down a corrugated dirt track for a couple of kilometres before we park and start to walk up a slope between some trees. The family we are going to see have apparently run away from the witches of Thaba Tseka and are hiding in the hills. They have done a good job finding this secluded spot, but we finally locate them in a small group of mud huts with the carcass of a cow lying outside. They are planning to eat the meat, but I’m not sure if that’s a good idea as it looks like it’s been lying in the sun for days and is more like biltong than meat. 

 

The five-year-old boy is quite disabled but at least well-nourished and with no contractures. I am relieved, I have seen some heart-breaking cases of neglect and severe malnutrition during my visits in Leribe over the last 6 weeks. I have now visited dozens of families, guided by Mme Maja, I don’t know what I would have done without her help. The families are widely dispersed, and she is a genius at getting them to trek into central locations to meet us so we can be more efficient with travelling time. Having a child with cerebral palsy herself and from a humble background she has a grass roots connection with these families and an empathetic understanding that I can never replicate. 

 

From September Mme Maja will be joining the physiotherapy and outreach team as the care facilitator for the Leribe district. She will continue to run a weekly carer to carer clinic from Motebang hospital for mothers with children with cerebral palsy (CP) and hydrocephalus, following them up with community visits. As CP is a lifelong condition this provides vital support for families, training them to provide the best quality care possible for their children and help them to avoid secondary complications as they grow older. Not only are there more children in Lesotho with CP, than in a higher income country, but they tend to be at the severe end of the disability spectrum and are therefore more at greater risk of contractures, dislocated hips, pressure sores and scoliosis. With few health care resources to help them their families need to have the knowledge to provide what home care they can for their children for the rest of their lives.

 

Mme Maja is one of the kindest people I have ever met, totally reliable, getting up at 5am every morning so she can wash and feed her son before we hit the road first thing. Her quiet guidance has got me through some dark hours and accepting sometimes there is nothing you can do except share a parent’s grief. A couple of weeks back we were huddled on the floor of a house around a paraffin heater trying to console the mother of a six-year-old, ravished by TB, emaciated, with only one lung functioning trying to sustain him with tiny gasps of breath, I doubt if he even weighed 8 kg. He was hanging onto life by a thread and sadly there was nothing we could do but share the mother’s sorrow, a week later he passed. 

 

It is not always like this and there are many children who somehow beat the odds and many inspiring parents, grandparents and guardians who provide the best they can in the poorest of circumstances. I am uplifted by their dedication and the opportunity to help them with advice, treatment and equipment that really does make a difference to these children’s lives. Last week I was back in South Africa buying wheelchairs and crutches with donations from the folks back home. With covid restrictions now lifted in South Africa we crossed the border in record time. Coming back through customs was still problematic, but fortunately I had Ntate Ntsukunyane, the OT, with me who can smooth things over with the customs people who are always looking to make life awkward and get a bribe. 

 

Ntate Ntsukunyane will now be joining the team in Maseru for two days a week to provide his professional expertise as Thato, the POP team leader, now leaves for a year’s study in Ireland to do her MSc. We will miss her advocacy for children with disabilities, project skills and connections. Thato has always been much better than me at the administration and presenting ideas in a way that is more likely to get them accepted. Recently she finely honed a bid for a grant from the British High Commission (BHC) for an initiative to improve the supply of assistive devices in Lesotho. This application is to set up a workshop and skills base for APT furniture at Abia high school. This is the high school where the children from Saint Angela go and where we have built a relationship with the principal and staff to support children with disabilities. 

 

Hopefully building a workshop at Abia will prove a sustainable project by training the teachers and students to do APT, as well as providing the children with skills that they can use when they leave school. While it seems like the BHC is keen to support this initiative nothing is straight forward, as all small grants are presently on hold until the UK’s prime minister’s replacement has been elected. Fortunately, Glasswaters Foundation has stepped into the breech, and it looks like whatever happens this project will go ahead, and this year will see the building of an APT centre at Abia high school and the training of teachers and students with disabilities to produce bespoke cardboard furniture for children who need supportive seating. 

 

Trying to support this development, while also moving to Holste in Leribe at the end of June life, means that life has been frenetic for me. I have now visited over 60 families in the district on the outreach program and assessed their children. On top of that I have had to return to Maseru 3 times for administrative matters, a two-day training program, visits to the schools and an equipment run to South Africa. I think things will now get easier as I have broken the back of the work in Leribe and from September I will be making follow up visits, which are always a bit easier than first assessments. 

 

I am very happy with the way work has gone in Leribe. With Mme Maja’s help we have got into a good routine of visits and covered a lot of ground. Overall, the families I have visited in Leribe have been poorer than in Maseru, the children younger and the terrain more remote. As you can imagine working in the community in Lesotho is very different to my former job working in the community in Powys teaching health board and has taken some adjustment for me to learn what realistically can be offered to families and children that will benefit them. 

 

I have made some useful local contacts and been able to draw on their skills to help families. The Motebang hospital OT is a prescriber for mental health and has been able to assist with some of the deficiencies of epilepsy medication here. Last week he joined us on a visit to a family we saw back in July, a very poor family with a son and daughter both with CP, whose parents are convinced they have been cursed by witches. 

 

Their older son has severe contractures and spends his life hidden in the hut lying on a mattress. When I examined him on the previous visit, his hips were dislocated, he had open pressure sores on his buttocks and uncontrolled epilepsy, as like many children here once they get too big to take to clinic the medication stops. When we approach the hut, we all stand in amazement. Sitting outside is the daughter in a brand-new wheelchair, not only that but it’s a good quality one and fits her! Such a thing I have never seen before. 

 

When the parents explain how this miracle came about it turns out that somehow, they have made a connection with the first Lady’s office, and it is her office that is responsible for donating the wheelchair. As national elections approach in Lesotho I cynically assume it is a gift designed to show the benevolence of the government to its people. After admiring the wheelchair and the daughter’s efforts to self-propel it, we examine the son. Thankfully his pressure sores have improved since I last saw him, and the OT is able to reinforce the education I gave to the parents and give a prescription to the mother for the boy’s epilepsy. She can now take the prescription to clinic without having to take the boy and obtain the medication he vitally needs.

 

The visit has been a success, hopefully the prescription will improve things for the whole family as they all sleep in the single room hut and boy normally has several large seizures every night which should now be controlled. As I gaze up from the mud huts to the distant Maloti mountains the vista is how I always imagined the outreach program would look. The condition of the children and what I had to offer them with few available resources was more of an unknown quantity. After nine months experience out here, I feel in a much better position to contribute advice and action that will bring about positive outcomes for children with disabilities and their families and change their lives for the better. We say goodbye and walk back up the hill to move on to the next visit, the next challenge…

 

 

 

 

Friday, 8 July 2022

Blog 51: Leribe Outreach

Mme Maja goes on ahead to the home while I dash back down to the car having forgot an assessment sheet. Its Monday and we are on our second visit of the day and the first day of outreach visits since I arrived in district of Leribe. The few days I have been here have been a whirlwind so far, making new contacts, trying to sort accommodation, and now visiting a whole new group of families and children. I’m excited, there seems to be so much potential here for improving the lives of children with cerebral palsy. 

 

The first visit of the day has gone well. A boy with a cheeky smile and good prospective for improving his milestones and independence. We leave the house ladened down with two large bags of dried beans the mother has farmed. Now, having picked up my assessment sheets back at the car, I jump across some bog and briskly walk back down the track, enthusiastic to meet the next child. I am soon at the small homestead Mme Maja has pointed out to me. I can see it’s a very poor compound with a few single room huts, and a rickety cage of sticks housing a few chickens. I go through the open door of the hut where I can see Mme Maja sitting and cheerfully greet the old lady and man inside. The old lady, who I presume is the grandma, sits on the bed despondently while grandfather pokes the fire. 

 

Mme Maja clears her throat, “So I have learnt just learnt the sad news that the boy has passed on Friday.” There is a pause, the grandma starts to sob, and I spontaneously cross the room to hug her. I can’t pass on my condolences in her language and its all I have to offer her. It’s only a brief moment and then I sit down on a bench, looking at the earthen floor while Mme Maja talks more to the grandma. 

 

The mother passed away 10 years ago when the boy was about six and since then the grandma has been the main carer for the boy. He was severely disabled with spastic cerebral palsy. He grew out of wheelchair he had years ago, and since then has mostly been lying on the bed, unable to sit up as his contractures grew worse over the years. He suffered a lot from vomiting and from what Mme Maja translates of the grandma’s story it sounds like his death was due to asphyxiation, the grandmother only realising something was wrong because she noticed his twisted limbs had finally relaxed into a more normal position.

 

Time passes in slow motion, and I continue starring at the earthen floor trying to imagine the boy and grandma’s life over the years, but its impossible. Eventually Mme Maja suggests we leave, and we take the boys old wheelchair with us. It sounds a little heartless, but its pragmatic way things work here, there are so many children with disabilities and so few wheelchairs. The boy’s father also lives in the compound and brings the old wheelchair down to the car for us. It’s a Shonaquip wheelchair, specialist designed and built to last. South African charities sometimes supply them for the children in Lesotho when they are young, but once they grow out of them it seems difficult for older children to obtain a larger size.  

 

I start the car and we carry on to the next visit subdued. Its only ten minutes down the road to the next child who is three years old, has no assistive equipment and spends her day on the floor, or on the bed in the small tin hut we are in. By the end of the visit, it has struck me she looks the perfect size for the wheelchair we now have in the back of the car. We go with the parents to look and sure enough it fits the girl beautifully, it’s in great condition and doesn’t even need to be repaired. 

 

I take a picture of the proud family and her in the wheelchair. It will change all of their lives for the better, but the moment is bittersweet. We drive on and I take Mme Maja back to her home to assess her son, who I have only met briefly. He is totally dependent, severely disabled and keeps vomiting. Despite all this he has a happy disposition. 

 

While I try to take a history, he starts coughing and a huge amount of viscous phlegm ejects from his nose and mouth. I wonder that maybe as he is so sedentary his lungs are full of secretions and decide to try some respiratory physio to see if I can loosen them. There is just enough room to get him on the floor in the small room and do some vibs and clapping over the chest wall. Nothing happens for a bit, then suddenly he starts being sick and I find myself kneeling in a huge pool of undigested porridge. 

 

He had breakfast over four hours ago and from the evidence I am now kneeling in it appears that because he is so immobile, he has a problem digesting his food. He is also constipated so I guess it reaches a point where if it can’t get out one end it comes out the other. All I can suggest is they feed him smaller meals to give his digestion a chance to work, and we try and build him an APT chair as soon as possible. He has an old one which is at the grandmothers and too small for him and his present slumped position on the settee surrounded by cushions, is certainly not aiding his digestion.  

 

I finally arrive back at the guest house which I am temporarily staying at while I find somewhere to rent. It takes me ages to do my notes as I can’t focus and when I finish, I wash and clean up the dried beans I was given in the morning, which have a selection of grit, straw and vegetation in them. By the time I’ve done that they still need well over an hour to cook so I give up and open a tin. Beans on toast, so quick and easy, you can beat it wherever you are in the world. 

 

Tuesday dawns sunny and bright as usual. The first boy we see is called Ben and has a hemiplegia. He is 10 years old and very interested in the toys I have. It’s such a relief to engage with him as many of the children I see have profound intellectual disabilities and are difficult to interact with. Play is always the easiest way to do physiotherapy, but the children need to be interested in the toys first.  

 

Soon we are having a ball, Ben kneels against a chair, using the seat as a table, where I place the toys which he plays with while strengthening his core muscles. As I dig into my bag of tricks I come across a mouth organ, which I have never used and had completely forgotten about. Ben already has a shaker on the seat in front of him and I wonder if he can use the shaker while I play a tune on the mouth organ. 

 

He does and gets it straight away, he’s in time and humming along to a tune he’s never heard before, I’m just making it up as I go along. It’s a magical moment of musical connection and he even anticipates the ending with a theatrical outstretched arm and shake of the shaker. Brilliant! I am absolutely made up by his performance. 

 

We go outside to see him in his wheelchair. Two things are immediately apparent, his wheelchair is too small for him and the access in and out of the house is a three-step nightmare. Like many children with disabilities in Lesotho he lives with the grandparents while the parents’ work. Granny is struggling to walk, let alone get a 10-year-old in a heavy wheelchair up and down the steps. I ask whether the grandpa can get some cement and turn the steps into a ramp. 

 

Grandpa is called and it takes him about 30 seconds to agree he can make an improvement on the current situation. You would think it would be obvious but sometimes these things must be pointed out. Reluctantly I leave Ben’s house, I could have played with him for hours. The rewarding time I shared with him sustains me through the next two difficult visits. A four-year-old and a one-year-old, both blind, both with microcephaly and severe intellectual disabilities. 

 

The four-year-old is obese and already 25 kg and a struggle to lift. He’s diet sounds okay, but he is obviously eating far too much. I point out to mum that at this rate they soon they won’t be able to lift him, and without a hoist it’s going to be a problem for everyone. I suggest she cuts down his portion sizes and leave her with the goal that he doesn’t put on any more weight in the next couple of months and starts to become a more normal circumference. 

 

The little one year old girl in contrast is tiny, has swallowing difficulties and becomes very distressed whenever mum tries to feed her. Swallowing difficulties have featured prominently in the children I have worked with over the years in Lesotho, and I have longed for a speech therapist to advise at times like these. There isn’t one so I must use what knowledge I have combined with a little common sense. 

 

I put myself in the one-year-olds place. If I was blind, had little understanding of the world and swallowing difficulties, being fed spoonsful of food must be a terrifying experience. I suggest to the mum she choose a time when her daughter is relaxed, and not too tired and see if she can give her some tasters of food on her fingers, before even trying to feed her. Then try tiny amounts, make sure she is positioned well, the mouth is clear before she tries another spoonful, and make sure she has plenty of time and patience. Mum nods, she’s a busy policewoman, but at least she has a carer to help. 

 

More visits follow on Wednesday, we spend a fair amount of it lost, as there is sporadic network and lots of missed calls from the mother trying to direct us. At one stage I think we might end up in South Africa, but we finally see the mother waving by the side of the track to direct us to the house. During our meanderings in the day, we pass close to Mme Maja’s mother in-law and pick up the old APT chair that her son has grown out. We also pick up his old wheelchair and take it back to Mme Maja house when we finish our visits. With a little adjustment it still works for him and certainly puts him in a better posture than slumped on the settee. It’s a happy ending to the day and I arrive back at the guest house to find the lovely lady in the kitchen has been boiling my beans for hours, so at last they are finally ready to eat!

 

Thursday is clinic day. Mme Maja facilitates a clinic at the local hospital for mothers and children with CP. Mme Maja’s son was born with CP and back then she had no knowledge of his condition or how to treat him. When he was six, she met organisers of Malamuele Onward, a South African organisation, based in Johannesburg, committed to improving the lives of children with disabilities in rural communities. Mme Maja went on a residential course to Johannesburg with her son to learn about CP and how she could best assist him as he grows up. Now she works as a volunteer facilitating the weekly clinic at the hospital, training, and transferring the skills she has learn from Malamuele to other mothers. 

 

There are seven workshops in the Malamuele carer-to-carer program she runs once a week on Thursday. The seven-week cycle began last week with workshop 1, What is CP? Today is workshop 2, CP as a way of life, explaining to mothers how CP is a lifelong condition and commitment. Children with CP can change in a positive or negative way over time, depending on how they spend their day and mums learn about how to help their children in a positive way. It’s a brilliant initiative, passing on knowledge and skills to these mothers when there is so little help available to them. From what I gather there are four district hospitals running this program in Lesotho, but not in Maseru district where I have just come from. 

 

At today’s clinic there are over a dozen mums and their children sitting on the floor of the physiotherapy outpatient room at the hospital. Most of the children are quite young, with at least four babies present, but surprisingly it’s not too chaotic. Once the learning session is over a practical session using massage begins, while I start to assess individuals. While the workshop provides a good foundation of knowledge for the mums, I can provide a more specialised assessment of their child’s individual needs. 

 

I commence with a one-year-old who I notice mum struggling to feed at the back of the room. Her Bukana (medical book) is already thick with notes. Doctors think she has dwarfism, brittle bones and CP. She has a fractured arm, burns to the stomach (when mum accidently split boiling liquid) and is undernourished. She is very fragile and it’s difficult to know where to begin with her multiple problems. Her muscle tone is stiff, she can’t sit and has poor head control. I decide to start with some basic positioning and feeding advice, nutrition is a fundamental need, but at times like these I wish I could call on a multidisciplinary team like I had access to back in the UK.   

 

By the time I’ve finished my assessment the next three babies have fallen asleep and everyone else has gone home, except a 7-month-old baby who arrived late. Mum brought her on the advice of a doctor who was concerned that she had delayed milestones and might have CP. From looking at her she might be a bit behind but there are no signs of CP. I show mum some simple activities she can do with her daughter to help her achieve her next milestones. Given time and encouragement I’m sure this little girl will do well.

 

I’m already tired by the day’s events but we go out to visit two more small children, both with hydrocephalus, living in the same single room house. The mums and their children are all lying on a couple of mattresses on the floor when we arrive. Both children have enormous heads, despite having shunts. I think this is because children must go to South Africa for this operation, so it always takes more time than is ideal. The two-year-old is unable to support the weight and size of her head and cries a lot when we try and support her with rolled up towels in a sitting position. We need to let her rest and lie her down on her side. Eventually she will get stronger with short amounts of activity every day, but it’s going to take time.

 

The three-year-old has some head control and can sit up with support. He’s a bright little button and chatters away. He only has use of his left hand, so I give him a shaker and we play a little music together, which is fun and makes him smile. Unfortunately, his right leg has been very painful for the last few days and he won’t let me touch it. I fear he has dislocated his hip and I tell mum she must take him for a scan tomorrow to investigate the cause of his pain. Throughout the visit both mums are joking and upbeat, and I leave wondering how they remain so cheerful in the dire circumstances they are living. 

 

On Friday we see three older children out in the community. Visits to older children can be very difficult as unless they have been well looked after over the years, with good positioning and stretches they can develop severe contractures, as in all the cases this morning. The other problem with older children is they get heavier and difficult to lift.  As there are no hoists to assist parents, older children and adults can often spend the rest of their lives indoors if they have no wheelchair.

 

The first teenager has spastic CP and spends his life in a tin hut, either on the sofa or mattress on the floor. I think with careful padding he could possibly fit into a standard wheelchair, if I can get hold of one, then at least he could access the outdoor area. The second boy had a road traffic accident when he was six resulting in a severe head injury. He subsequently had seizures and has never walked or talked since. His tone has increased over the years, and he has developed contractures. 

 

We arrive to find smoke coming out the door of the hut as the family have lit a fire inside and there is no chimney. The winter mornings are very cold here and the family appear to have decided smoke inhalation is preferable to freezing. Eventually mum and a sibling carry the 15-year-old outside and put him on the ground with some rolled up blankets. The boy stares vacantly, his eyes flitting with nystagmus, his arms and knees flexed with increased tone, one of the ankles deformed and dislocated.

 

If there is even a small glimmer of hope to improve his life we must try. He is lifted into a plastic garden chair so I can take measurements for an APT reclining chair which I send the back to Maseru for Thato and Ntseliseng to translate into a cardboard chair. Hopefully this will improve his sitting posture, stop further contractures, reduce future complications and maybe even allow him to be brought out into the sunshine. 

 

The final visit of the day is a 21-year-old lady with spastic CP and intellectual difficulties. She lies on the settee flapping her hands infront of  her face and making chirping noises. When I remove the blanket, her pelvis is rotated and her legs “windswept”. This means the whole spine is starting to rotate, personnel care becomes challenging, digestion difficult and sitting up almost impossible. After trying for 20 minutes with blankets and pillows we slightly improve her position on the settee. I doubt if we can reverse what’s happened, but maybe if they position her more carefully it will stop things getting worse in the future. 

 

By the time I finish my notes and do some follow up messages it’s been a long day at the end of a long week. Seeing new patients every day and doing assessments all the time is demanding. Fortunately, there are bright moments to lighten the load, Mme Maja has been a great help, we’ve had some laughs, and it will get easier once I start to do the follow up visits. Leribe district is proving testing, there are a lot more babies and infants to see here than in Maseru. It’s not my area of expertise, but the younger the child the more potential there is to have a positive impact on their development and give parents the right information from the start. I’m learning fast and I am up for the challenge.   

 

 

Sunday, 5 June 2022

Blog 50: Halfway

I have now been in Lesotho six months since my arrival on December 3rd, 2021, and I am halfway through the year I said I would spend in Lesotho working with children with disabilities. Somehow this has also corresponded with blog 50, which seems like an auspicious coincidence. As I face my first winter in Lesotho, I have been reflecting on what has been achieved so far and how best to spend the next six months.

 

This visit has been different to my other visits in many ways. Firstly, the length of time. Previously the longest I have spent here is three months, sandwiched between working for the NHS, with barely time to pause before turning around and going home again. More time certainly gives you a better chance to develop projects, relationships and make project work more sustainable. 

 

Having funding and a collaboration with the Canadian Foundation, Glasswaters, has also helped support the project and help it grow. Glasswaters have supported my expenses here, as well as administration and equipment costs for the project and paid for workers on the ground. 

I have trained Thato and Ntseliseng on previous visits and online, enabling me to keep in touch with while at home and now work with them in Lesotho. This has allowed the work to be more sustainable and continuous, rather than trying to pick up the pieces of where I left off like on previous visits.   

 

The focus of the work has also been different. Previously I have worked at two children’s centres where I set up physiotherapy rooms, trained staff, brought in equipment from the UK and was able to see large numbers of children every day and progress exercise programs and not have to travel anywhere. Now the work is focused on the physiotherapy and outreach program, (POP), training families, lots of travelling and making and buying assistive devices locally. Educating and empowering families has meant the work has proved more sustainable than previously, but I do less hands-on physiotherapy and the work comes with its own challenges.  

 

Most of the outreach work has been working with families belonging to the Mo-Rate Cerebral Palsy group. An organisation of mothers with children with cerebral palsy with over 150 families registered and spread throughout Lesotho. Throughout December I reviewed the Mo-Rate children that the team had already assessed and was working with in the Maseru district. I did online training with the team through covid lockdown in 2020, using the Multi-Agency International Training and Support (MAITS) program. They used this program to provide families with education and advice on how to best support their children and improve their health and independence. Many of these children were at the higher spectrum of disability, living at home with parents and carers who often had little idea on how to handle their children or care for their needs. Sometimes parents believed they had been cursed and had hidden their children away.   


What I found when reviewing this work was that the team had provided invaluable support and advice to carers in terms of basic nutrition, feeding positions, postural support, hygiene, stretches and suggestions for cognitive stimulation using information provided by the MAITS program. As always when working with families some parents had responded more positively than others, but for the most part the team’s advice and suggestions had empowered the parents to make a positive impact on the health and quality of life of the children. I was impressed with the work Thato and Ntseliseng had done, the relationships they had established with the families and the progress the children had made. 

 

For the last six months I have been based on the outskirts of the capital Maseru, living with my co-worker’s mother-in-law, just a few minutes down the road from Saint Angela children’s centre, and the local and the local primary and secondary schools which they attend. This has proved convenient, but intense at times. Poor relations with the management at Saint Angela and child protection issues have meant it has been no longer practical to use the physiotherapy room I set up at Saint Angela in 2016 or run physiotherapy sessions there. The lack of physiotherapy has been to the detriment of the children’s health and well-being. 

 

The problems of using Saint Angela as a base have been overcome by seeing the children at the local primary and secondary schools and seeing their families through the outreach program. We have assessed the children at school and run general physiotherapy sessions and floor football to raise the children’s levels of fitness for those that attend the primary school. We have also given out two assistive paper technology chairs to students with cerebral palsy to support their seating during school time and help them focus on their studies, along with two new wheelchairs and upcycled another wheelchair. 

 

After giving out a new wheelchair to Marsela last week, to her great joy her and her teachers, I took back her old wheelchair which belongs Saint Angela. I knocked on Sister’s door, greeted her, and explained that I have given Marsela a new wheelchair and I am returning the old one. Sister looked up from her desk,

“I need a wheelchair too” she says petulantly. There is a pause and a clatter as my jaw drops on the floor. Recovering I say

“Oh why?” 

“I am disabled now, and I need one to get around”. She says it without grace and I absorb this statement along with my memories of her on my last couple of courtesy calls here when she was murdering, plucking, and boiling some of the hundreds of wretched chickens that reside at Saint Angela, and my conversation with one of the boys that live at the centre who she boxed around the ears so viciously when he missed church, that his head was ringing for weeks. 

“This is all I have” I say pushing Marsela’s tiny, battered wheelchair towards Sisters substantial girth. 

 

I leave, I will never understand that woman’s bitterness and cruelty. Fortunately, the local school principals have proved much kinder and easier to work with. As well as the regular sessions at the primary school, I visit the high school regularly and have given out wheelchairs and crutches to children who attend there and live at Saint Angela. The high school has assisted with the recycling of wheelchairs and are interested in building an Appropriate Paper Technology (APT) workshop/physio room/clinic to be run by the teachers and pupils. With all the children with disabilities that attend the high school it would be a very sustainable project but would need to find a substantial amount of funding. Another project for the future … 

 

Before I came to Lesotho, I had knowledge of APT projects in low-income countries providing specialised furniture for children with disabilities using recycled carboard, but I had no practical experience of how to make it. After watching some online videos and buying a book I had some weeks of experiential learning with Thato, and we produced our first prototype chair in January. 

 

We have now produced a dozen chairs which has made a real difference to the ability of children to sit up, use their hands, improve their posture, core strength, and socialise. We have found the chairs particularly useful for those children with children with cerebral palsy who have the type with uncontrolled movements, dyskinesia. Bespoke chairs enable the children to “fix” themselves and help reduce their uncontrolled movements. We introduced two chairs into school to help a couple of girls with this condition which has benefitted their schoolwork and concentration.   

 

The achievement of producing this furniture has been even more remarkable since we have not had a proper workshop space to produce it in. Fortunately, we have been able to use the garage and a couple of rooms in a building of the guest house where I have been staying. Several incidents of low back pain were necessary to realise we would benefit from buying a table so we could stand up and work and measure and cut out the pieces needed to make the chairs. We have also invested in some tools and equipment that which have improved our work and efficiency. These factors, together with experience and the accumulation of our skills have improved the final product and enhanced the accessories we are able offer clients.

 

Acquiring the skills to make APT furniture and seeing the effect of it on children’s lives has been one of the highlights of this first six months. At home I order equipment through reps who demonstrate and adjust assistive technology according to the needs of the client. Making the furniture myself has made me more acutely aware of how I need to adapt the furniture to the client’s needs without the ease of the press of a button. Getting it right and seeing how it benefits the children has been of great personnel satisfaction.

 

Providing wheelchairs for children I have known for years and finally seeing them in something that fits, is comfortable and increases their independence has been another highlight of these last six months. Thanks to the generosity of donations and fund raising at home I have been able to go to South Africa and buy six new wheelchairs for children and upcycle another three. Knowing the positive impact on their physical health, mobility and well-being has been very gratifying, especially as all but one of these children are from Saint Angela and I regularly see the improvement it has made on their daily lives as they use the wheelchairs to go to and from school. 

 

In addition to the APT and wheelchair projects, working with the schools and Mo-Rate CP children I have added my professional expertise to the project and taken the opportunity to advocate for children with disabilities both at grassroots level and national level through stakeholder meetings. I am proud of what the project has achieved so far. It’s a relatively low budget project with a big impact, touching the lives of dozens of families and children and making a real difference to the quality of their lives and the physical and social environments in which they live. 

 

I now feel I have reached a point where I feel I have achieved the major objectives I set out to do in the Maseru district, and although there is still plenty of work here, I feel the team here can continue to develop it without me, and my skills would now be better used in a new district. I am hoping to finish outstanding pieces of work in Maseru over next few weeks before moving to a new district by the end of June. 

 

The last six months have been a rollercoaster of emotions, highs and lows, despair and joy, frustration and satisfaction. Getting a car at the end of January not only helped the project logistics but has also enabled me to get out in the mountains and access the great natural beauty of this country and restore dwindling energy supplies when it’s all got too much. It has not been all sunshine and unicorns but that was never going to be the case. The most important thing is that the project has made a real improvement to children with disabilities in Lesotho and their families and hopefully the next six months will bring me further opportunities to enhance the work that POP is doing out here. 

 

Thanks to everyone back home that have supported me and thanks to everyone that has backed the project in so many ways, I could not have done it without you. 

 

Tuesday, 3 May 2022

Blog 49: Boys to Men

We are in the high school library doing a final measure up of the boys for their new wheelchairs before I go to Bloemfontein to collect the order the following day. I’ve already brought one wheelchair for Kats which I am using as a test size for Kamo and Thepello and it seems to work well for them. Alex is more complicated; he has brittle bones and despite being twenty years old is about the size of five-year-old. I can easily pick him in my arms, which I do, and put him in Kats wheelchair to try and work out which of the various combination of sizes and parts, that are available to me at CE mobility, will work best for him. I must get it right as these guys have been waiting years for a wheelchair, while theirs disintegrate and injure them. When they finally get their chairs, they will have to last for a long time. 

Kats, Kamo, and Alex are all joshing each other, as they always do. I’ve known them since I came to Saint Angela in 2016, when I first arrived in Lesotho to work with children with disabilities. They were young teenagers then, enthusiastic physiotherapy students, always smiling and keen to improve themselves. I remember Alex showing me his taekwondo and doing wheelies in his broken-down chair, Kamo’s amazing spin kicks when doing floor football, Kats leading physio sessions and showing the younger children how to do their stretches. I have watched them grow over the years, and as I realise, as I assess them, they are no longer boys, they are men, even Alex’s shoulders have broadened into manhood. Hopefully they will soon graduate from school, and they all need wheelchairs that will see them into adulthood. Tomorrow, I intend to see they get the chairs they so desperately need and deserve. 

 

“Look at you all” I say proudly, you are now all men.” “Except him” says Alex pointing to Kats, who is the biggest of them all, “he is still a child”. They all burst into laughter, including Kats. I smile and shake my head, these guys!  

 

Folks at home have donated and raised money so that I am able to buy five more wheelchairs to add to the one I have already brought for Kats. Thankfully the occupational therapist, Ntsukunyane, has agreed to come with me again. He rocks up first thing in the morning and we make for the border, which is only just down the road. We both need to get a covid vaccination certificate and join dozens of others waiting in a slow-moving queue at the border. After three and a half hours we finally have our precious certificates and cross the border. Ntsukunyane is driving and we are cruising steadily along the almost deserted long straight road to Bloemfontein. We’ve only been driving for about 20 minutes when Ntsukunyane makes an exclamation. I see a policeman in the long grass by the side of the road with a speed camera, and we are pulled over. 

 

“Speeding? “I ask Ntsukunyane puzzled. “No, I was not speeding” he shakes his head. He gets out of the car and as time ticks by I can see things aren’t going well with the fat policeman who is writing a charge sheet. Ntsukunyane eventually returns with the verdict which reads “dangerous driving” and a thousand rand fine. “No way!” I say outraged, “Did he have any evidence?” “No, he said I overtook before the solid line was broken and if I wanted to argue he’d call reinforcements to take me to Ladybrand cells and lock me up until a judge was ready to hear my complaint.” 

“*******” I say, “that is so unjust”.

 

 “There is nothing I can do, unless I want to spend a long time in the cells.” Ntsukunyane is philosophical, I am incensed, but don’t want to go to Ladybrand and spend an indefinite period throwing the rock buns Ntsukunyane has brought through the prison bars for him to eat until he is released. The policemen have us over a barrel and with me still fuming we continue on our way. 

 

After a quick visit to a shop to buy some tools and crutches we go to CE mobility to pick to up the wheelchairs. It takes quite a time to sort the various combination of arm rests and footplates and its close to 5pm when leave. By the time we get to the border its dark and we head down an unlit turning where there are lots of parked lorries, to declare the wheelchairs. Thank goodness we are the only ones in the queue because it takes them at least 30 minutes to sort the paperwork and decide I need to pay a 650-rand duty. They have no card machine, and I am fortunate that I have enough in cash. We go and get our passports stamped, then we must go somewhere else to hand in the invoice so the Lesotho government can claim back the VAT. 

 

Ntsukunyane takes the invoices to customs while I wait in the car, he’s been totally brilliant sorting everything out. I have no idea of the processes that need to be followed, except that I need two copies of the invoices for the border crossing, which I have. Twenty minutes goes by and a worried Ntsukunyane appears asking if I have a third copy of the invoice as customs are saying the ones I’ve given him aren’t the original. “No these are the only ones I have; they are the originals; you saw them printed out at the shop.” 

“The lady at customs said they are copies and if we can’t produce the original, she’s going to confiscate the wheelchairs.”

 

I jump out the car and go with him to customs. The lady behind the desk looks as hard as nails and I try to work out how best to pay it. I temper a desire to throttle her and decide to plead, rather than go for a full-on emotional breakdown.

“Look this is the original invoice, I say, slightly tearfully, you can see it has the receipt stapled to it.” She turns the sheets of paper every which way suspiciously and seems particularly displeased with the slightly faded “Paid” stamp the shop has used.

“Yes, I can see the receipt she says impatiently, but this invoice is a copy, and I will have to confiscate the wheelchairs until you can return with the original invoice from Bloemfontein.”

I imagine the guys faces when I tell them their wheelchairs are locked up in customs. I renew my pleading, I can’t understand her argument at all, even if she doesn’t like the look of the paper the invoice is printed on,  surely she only needs the number to claim back the VAT. 

 

“Did you pay for them?”  she asks me sharply 

“Yes”

“And where are you staying?”

“Maseru”

“Full time?”

“Yes”

“What is your address?”

She takes my address resentfully

“If there is anything wrong with the paperwork we will come and find you”

I resist the impulse to say something rude, thank her and make a sharp exist before she changes her mind. 

“What was that all about?” I ask Ntsukunyane

“She thinks you might be running a business scam.”

“Well, if I was, I could think of something better than trying to get five wheelchairs across the border! No wonder they are so hard to get hold of in Lesotho.” 

It’s taken over two hours to get through customs and after another 55 rand we finally cross back into Lesotho. I drop Ntsukunyane in town and arrive back home exhausted and totally stressed out by the whole drama of the day. 

 

Two days later I am with the team to hear the results of the Assistive Technology (AT) Capacity Assessment Lesotho. This report has been drawn up by UNICEF Lesotho, CHAI, (Clinton Health Access Initiative) and the Ministry of Social Development (MoSD) and our team has taken part in the interviews which have been conducted with stakeholders over the last 5 months. Since I have been coming to Lesotho, I have seen little evidence of equipment supplied by MoSD and that which I have come across has not been fit for purpose. This is not surprising as the supply chain seems to have completely broken down and there appears to be no connection between the need for AT, individual assessment, and supply response (hence the need for my trip to Bloemfontein two days previously).  

 

The report concludes, Lesotho has no existing policy on AT regulating standards, no central data base, a lack of skilled AT personnel, inadequate financial resources, interventions are fragmented and uncoordinated and there is a pressing need for an overall national AT strategy. MoSD says it has a budget of 3 million rand a year, spread between the districts and all AT needs. Admittedly that not a lot, but I feel the first step is to try and use what budget there is efficiently and effectively. I am very glad I went to Bloemfontein to get the wheelchairs, rather than wait for years for the MoSD to supply them. I’m also very glad that the team is making the bespoke seating out of cardboard, for children with seating difficulties as specialised seating is not even on the list of equipment procured by the MoSD. The rest of the day is taken up by discussion groups trying to find a way forward and as most of the conference candidates are from MoSD I leave with a heavy heart. 

 

While is it difficult to change long standing problems and administration inertia at government level, action at grass roots level can change people’s lives. Good fitting wheelchairs that work properly not only improve a young person’s independence but also prevent longer term skeletal problems and associated pain, they are a fundamental need for going to school if you can’t walk. The wheelchairs which are being replaced have broken backs and are all too small for the guys. Thapelo’s is so small he sits with his knees up to chest; this is not only painful but very undignified for him as a 16-year-old. I can’t wait to replace these clapped-out chairs with new ones properly measured and the great day dawns sunny and bright.  

   

The original plan was to just take the four wheelchairs I have for the high school boys, do the final adjustments there and take a few pictures. I arrive to find the principle has a different plan and has decided to mark the occasion with a full school celebration. Hoping the guys won’t be too embarrassed by this I give out the chairs. They are standard sizes so there is limited adjustment on them. The wheelchairs for Kats, Kamo and Thapelo fit well, and I can see they are made up. Alex looks little uncertain, it’s a big change for him, and we will have to see how it goes.

 

So, it’s time to celebrate and fortunately, Ntsukunyane, Thato and Ntseliseng can join us along with the whole high school. Harmonious singing, dancing and a few speeches follow. It feels very joyous, and I think the guys enjoy it too once they leave the podium for the school choir and dancers take centre stage. While the celebrations last about 45 minutes the benefits of the wheelchairs should last the recipients years and with the help of the school hopefully the old chairs can be repaired so even more students can benefit. I will remember this morning for a long time, the singing the dancing but especially Kamo’s face when he tried his new chair for the first time. He closed his eyes and sank back into the chair. “Is it okay?” I asked him anxiously. 

“Its wonderful” he said with a blissful smile.   

  

  

 

 

Thursday, 21 April 2022

Blog 48: Diagnostic Dilemmas

I take a thorough history and assess the boy; we are at the high school and Thato is translating for me. He remembers his troubles began in primary school when walking became difficult. Over the years things became more problematic and eventually he had to use crutches and leave his local school as the grounds and toilet facilities became too testing for his ability and the teachers believed he was being lazy. He came to Saint Angela, where disabled facilities made his life easier, and the high school is only a few hundred metres away. He still had to get up very early so he wouldn’t be late for school, as even this short distance was taking him over 40 minutes to cover using his crutches. Gradually it became too much for him and this year he had to start using a wheelchair and needs someone push him as he can’t self-propel. 

 He says he can’t self-propel because he hasn’t learned how to yet. He says can’t independently transfer because he hasn’t learnt how to yet. There is a desperation in his conclusion that he only needs someone to teach him and he will be able to do these things one day, but I know he can’t be taught. His legs and arms that can’t even lift their own body weight will never be able to do these things. His progressive weakness and fatigue, his problems with breathing, heart palpations, enlarged calf muscles, history of onset can only lead to one conclusion, he has muscular dystrophy.

 

Muscular dystrophy is a progressive muscle wasting disease caused by a genetic mutation, usually passed on by the mother to their sons. There are many different kinds but from his history I suspect he has the most common type, Duchenne’s (DMD). I ask him if he knows what is wrong with him and he says he doesn’t know and he doesn’t understand why he can’t do things anymore and is getting worse. He has tears in his eyes and hangs his head. I tell him we will come out to visit him at home and discuss his problems with his parents. It’s a dilemma because I am going to take away any hope he has of getting better and replace it with the bleak realities of a progressive disease in country which offers him and his family little assistance to get through the toughest of times. 

 

In the UK expert medical specialists and therapists are available to support patients with muscular dystrophy, together with power chairs, hoists, support groups, counselling, respite care, disability transport and all manner of things to try and ease the burden of this tragic disease. Here in Lesotho the boy tells us he has received some vitamin supplements and told to go to physiotherapy and do some exercises. This stopped back in 2019 and now the family are basically on their own and must find the strength to support each other as best they can. Easter weekend is coming so the boy will be going home. Thato calls his mum and arranges an appointment, and we head out on Good Friday. 

 

The rough road gets muddier and eventually I park rather than risk getting stuck in a bog. The boys brother comes out to meet us and guide us on foot to the house, I regret I have put on my best trainers, while Thato regrets she has put on her white shoes. The house is in the middle of a row of one room buildings with tin roofs, typical of the housing poorer people live in Lesotho. In this one room all family life takes place. We knock on the door and mum invites us in. There is a double bed taking up most of the space on which the two teenage boys sit. The rest of the room is crammed with a wardrobe, a kitchen cabinet, a table with a washing up bowl and a two ring gas burner on it, boxes of clothes, tubs of maize and various food stuffs, a wheelbarrow and spade, a spare door propped against the wall with a picture of Jesus and an Angel stuck to it, vegetables and beans spread on sacks the floor and a bench on which Thato, and I are invited to sit. 

 

The mother sits opposite us, a slim woman, her face tired and drawn, a cross around her neck and clasping a battered straw hat in one hand. We introduce ourselves and Thato translates for me and explains why we are here. I ask if they have the Bukana, the boy’s medical book, unfortunately it has been left at Saint Angela, so I ask her to tell us about his medical history and what has happened over the years. As the mother recalls everything slow tears of desolation run down her cheeks and continue for most of the two hours we are there. She picks up a flannel and uses it to occasionally wipe her face when the tears get too much. I want to reach across and try to console her but feel that is culturally not the right thing to do and might embarrass her and the boys. 

 

The boy sits on the bed with his head down pretending to read a newspaper but taking it all in. His mother’s moment of greatest despair comes when she tries to explain how she has to carry him down the muddy track to the long drop toilet, I can’t imagine how terrible it is for her or her 16-year-old son. He has no wheelchair, no independence, no dignity, and she must watch her boy slowly losing the most basic of capabilities. She says the doctors have told her he has a disease passed on in the family and that he would end up in a wheelchair. She says she has tried to get a wheelchair, but to no avail. He is borrowing one from Saint Angela when he is at school, but he can’t bring it home and anyway it’s too small for him and hurts his legs. 

 

I try to gently explain about the nature of DMD and how the progressive muscle weakness affects not only a person’s mobility but also the heart and respiratory muscles. I suggest to her some of the practical things she can do to help her son, some passive stretches to keep his joints from stiffening up, posture awareness so he can breathe more easily, good nutrition and help with activities of daily living so he can preserve his energy, as even small amounts of activity quickly exhaust him. For his part I encourage the boy to do some deep breathing exercises to keep his lungs fit and try to reassure him that it is not his fault, it’s not that he’s being lazy, or not trying hard enough. 

 

The boy also needs additional help with his activities of daily living when he stays at Saint Angela so he can save his energy for school, but the care staff are over worked and underpaid and unable to give him more time. Sister dropped him off at his last hospital appointment and left him there alone for half a day. Without being able to self-propel he was totally stuck for four hours, long after the examination was completed. His mum is concerned that any complaints about this lack of care will result in his expulsion, and he will never have a chance to complete his schooling. She begs us not to say anything, however inadequate the care is at Saint Angela it’s all there is for him, and he needs to keep his place there.  

 

For our part I pledge as much support as we can give both practically and emotionally. I add him to my wheelchair list when I go South Africa next week. Once he has a wheelchair we can bring it back with him from Saint Angela during the holidays so he can use it at home. Perhaps we can improve the path to the toilet to make it more accessible. He has a check-up due in July and I want to go with him to see about the possibility of him getting steroids to maintain his strength to complete his schooling. He likes school, his favourite subject is maths, and he has one more year to complete and graduate. It would be a goal for him and give him purpose, but without more medical help I’m not sure if he will make it. The alternative of giving up school and spending the rest of his time in this one room hut would be too crushing for him and the family. I hope somehow, we can help to keep this small glimmer of hope alive for him and offer him a realistic prospect for his immediate future to focus on. Beyond this possible dream the bridges which lie ahead will have to be crossed when he reaches them.

 

The mother escorts us back to the car, she has stopped crying and seems a little brighter, maybe because someone has taken the time to listen to her troubles and maybe because we have promised some practical support. We wave goodbye and drive away. Thato shakes her head, “Eish, this job!” she says and doesn’t need to add anymore, we are both totally spent. 

 

On Easter Monday I go on another home visit to a boy residing at Saint Angela during term time, but mum has pick him up over the Easter weekend to stay with his grandma and uncle, who live in the Maseru district. I have assessed this smart 10-year-old boy at the primary school and diagnosed him with spastic cerebral palsy affecting his lower limbs. During the physiotherapy sessions we run at the primary school he has been an enthusiastic participate and I wanted to meet his parents to speak to them about how they could help him with his physiotherapy during the holidays. 

 

I arrive with Ntseliseng, after explaining to the family who I am and about the outreach program. I ask to see his Bukana and happily, they have it.  I flip through the pages which detail a premature birth, admitted to hospital with respiratory distress, vomiting and seizures. After assistance with breathing, infusions, and medicine to control the seizures he was discharged but at three years was still unable to walk. Sent to physiotherapy there was no progress and eventually mum was able to obtain a wheelchair for him through some organisation, but I’m not clear who. This wheelchair is now far too small for him and broken. 

There is nothing from the medical history in the Bukana to suggest he has anything other than the cerebral palsy I have already diagnosed.  There is also a physiotherapy entry in 2014 which notes in small writing, “paraparesis CP”. 

 

“So, you know your son has cerebral palsy?” I ask the mother. Ntseliseng does not need to translate as the mother speaks good English. The mother looks puzzled and says “No”, she didn’t know. I go onto explain about the causes and nature of cerebral palsy and demonstrate the stretches with the boy which will help prevent contractures of his legs and the exercises which will keep him strong for independent wheelchair transfers. The mother helps with the stretches when I invite her but looks shocked and upset. Eventually she asks to speak to me outside, she has tears in her eyes. “You are saying he will never be able to walk?” 

 

I take a deep breath, “Yes, I’m really sorry he will not be able to walk.” 

“And there is no point in me taking him to South Africa for an operation to help him to walk?

No, I’m sorry there is not an operation that can help him to walk” I say sadly. 

“And we should concentrate on these exercises and try and get him a wheelchair that fits him?” She asks with resignation. 

“Yes, I think that is the best way forward” I say quietly. 

 

The small entry in the Bukana was obviously never explained to her and I have now extinguished the hope she had that her son might walk one day. I have found that even when children do have a diagnosis from a professional health practitioner in Lesotho it is not explained in a way parents can understand or empowers them to prepare for the future. I try to soften the blow by urging her to focus on her sons schooling and developing the bright intelligence he obviously has. She goes on to tell me of her shock when she picked him up from Saint Angela this time, dirty, uncared for, itching with a rash, his wheelchair broken. She can help with his exercises at home but who will help him at Saint Angela?

 

I compound her misery further by explaining the physiotherapy room has been shut at Saint Angela for over a year and I can only see her son once a week at school. That Saint Angela is chronically understaffed and overcrowded and that the itchy rash her son has is scabies, a contagious mite passed on through close contact. We noticed several of the children had the itchy raised lumps when we saw them at school, I took pictures and sent them to the paediatrician I use to worked with back in Powys. She diagnosed scabies and sent details of the necessary treatment and cream needed to kill the mites and eggs. I explain this to mum, who looks horrified and then it dawns on her. “But if I get the cream and treat him then he will just catch it again when he gets back to Saint Angela?”

 

“Yes, all the children need to be treated to eliminate it” I concur. We agree that there is little chance of that happening and since her son is presently sleeping three in a bed she may as well leave it until he comes home for the long winter break. She asks me if I know of anywhere else she can send her son apart from Saint Angela, but I don’t know anywhere. Poor parents are in between a rock and a hard place when it comes to getting quality residential care which will allow their children to go to school in Lesotho. I add the boy to my wheelchair list for when I go to South Africa, write down the exercises for her that her son needs to do, the cream she needs to get for scabies and my What’s App number. She will start to look for somewhere else for him to have an opportunity to develop the sharp mind he undoubtedly has, but it’s a tall order.  

 

Diagnostic dilemmas continue to be a significant part of the challenge of working in Lesotho for the Physiotherapy and Outreach Program. Identifying conditions without medical background information is difficult enough, but it’s only the beginning of tackling the complex issues that surround the barren landscape of disability health care here. Trying to find a positive way to use a diagnosis which will benefit children and their families without them losing all hope is testing me to the maximum. I wish that I could offer the two boys I have seen over Easter more, but all I can do is use what we have to do the best I can.